‘I Am Number 17’: Kildare boy with rare disease features in new book

A young Kildare boy, Cian McCarthy from Nass is featured in a new book called, ‘I Am Number 17’ which aims to cast a spotlight on the lived experience of rare disease. 

Leinster and Ireland rugby player James Lowe officially launched the book on Wednesday September 10. ‘I am Number 17’ features seventeen people who are living with rare diseases in Ireland. 

The ‘I am Number 17’ campaign was jointly launched by Rare Disease Ireland (RDI), Rare Ireland, and Takeda Ireland in February 2024. The aim of the campaign is to increase the understanding of what life in Ireland is like for people living with and caring for those with a rare disease. 

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The book chronicles the story and impact that the campaign has had on Irish society, as well as featuring the personal stories and experiences of the 17 Changemakers.

The “17 Changemakers” featured in the book represent a wide range of age groups, diseases, ethnicities, and religions across Ireland. 

Cian, a four-year-old boy from Nass, Kildare, is one of the Changemakers featured in the new book.  He lives with NARS1, an ultra-rare neurological condition that was only discovered in 2021. 

Cian first began his journey with NARS1 at eight months old when he began to miss his milestones, however it wasn’t until he was two years old that he received his official diagnosis. 

Cian’s parents, Ross and Caitriona shared his story of hope and resilience with the belief that with greater public awareness and understanding the journey of navigating life with a rare disease could be less isolating. 

His parents hope their son’s story will inspire other families navigating life with a child with a rare disease to “seize every day and create joyful memories.” 

Ross describes their experience of caring for a child with a rare disease as “Hopeful, optimistic, learning and determined.” 

Speaking at the book launch at the Mansion House in Dublin, James Lowe said: “When I was asked to support the ‘I Am Number 17’ campaign, I didn’t hesitate. Having been diagnosed with Juvenile Idiopathic Arthritis (JIA) when I was 14 years old, I know what it feels like to not understand what’s happening inside your own body and to feel like no one else quite understands.” 

He continued: “I wanted to share my story to help children and families going through that same feeling of isolation and uncertainty. As a sports-mad teenager, not being able to play the games I loved was really tough. It took time, treatment and patience, but slowly I got back to the sports I loved and now I am playing rugby for Ireland. 

Speaking on what the campaign means to him Lowe explained: “It is an honour to stand with these 17 Changemakers today, to hear their stories and officially launch this book. This campaign has shone a light on rare disease in Ireland in a way that’s never been done before. Not only has it been impactful in raising awareness amongst the wider public, but it also offers support and comfort to those living with a rare disease to know that they are not alone.” 

The launch of the ‘I Am Number 17’ book comes following the August publication of the new National Rare Disease Strategy 2025-2030, a step towards improving the lives of the estimated 300,000 people living with rare diseases in Ireland.